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KTeague, I'm so happy to know this is helping you! 5 to 7 hours of good sleep is quite an accomplishment, considering where you started. You go, girl!

Adding my congrats and hopes it all continues...sounds so good compared to where you were!

Thanks for the well wishes and suggestions. By the way, tried the X placement last night. Slept 6 hours without any remembered wakeups! Usually there's a few brief ones and sometimes a hint of the legs being restless. Not even a hint. Instead of calling myself SleepDancer, I may become HappyDancer.

Hi Kathy

Here's hoping that your new video will send us all to sleep with boredom

Mars

Ok, I think I've been at this long enough to no longer call this an experiment. The TENS is now my only treatment (besides supplements) for my RLS/PLMD, and my legs are less problematic than they've been in years - and without side effects! I consistently use the X configuration for the electrodes for at least 30 minutes. Sleeping more has reintroduced what seems like carpal tunnel, and most nights I wake with numb and/or painful hand(s) and forearm(s). May have to try a round with the TENS on the hands before bedtime too.

I am so very grateful for how much this has helped me, as I was in utter misery. It saddens me that there's a world full of PLMD sufferers who have no idea this is an option. It was the environment here of advocating for oneself and thinking outside the box that put me in the mindset to even try something different. Thanks for all the support, encouragement, and advice. We did it!

KT, pay attention to your hand positions when you sleep. I sleep on my side and wedge one hand between pillows (I use two) and rest the other hand on a pillow I use to support my arthritic shoulder. The key is not to allow your wrists to bend, that's what causes pressure in the carapal tunnel. And ask your doctor about upping Vitamin B. That's supposed to help.

I'm so glad the TENS is working for you. You really need to get the word out to sleep physicians and they need to start studying this to see if it works for others. Maybe a TENS manufacturer would be willing to try to get sleep doctors interested. This could help many people.

Janknitz, thanks for the Vit B tip. Have you found the OTC wrist braces to be of any help?

I have been wondering how to increase awareness of the TENS as a treatment option. Hadn't thought about approaching those behind the TENS who would take a promotional interest as they would have everything to gain. Thanks for that. I will first approach those with the unit I use to see if they are interested.

By the way, nearly 8 hours of sleep last night. Today looks good!

EDIT: Have sent email to manufacturer. Will report if any response.

Yes, the splints are helpful to keep the wrists properly positioned.

Another carpal tunnel person here... I second the call to watch your hand and wrist position while you sleep. It's so natural and soothing to curl up your hand and arm close to your face as you go to sleep, but it puts a lot of stress on all the muscles, ligaments and nerves in the area and they don't get a chance to be restored as you sleep. Also be mindful of your hand/wrist position while you're awake and listening to someone speak or while watching TV, etc. Leaning on your hand or fist as you read something on your monitor also stresses the wrist. It's amazing how much you have to be aware of and deal with -- almost like sleep apnea therapy!

I found the OTC wrist and forearm supports be most beneficial during sleep, or at times when I wasn't very active to allow my wrists and forearms to get some support and rest. However I ultimately went for the surgery when I found too many activities of daily living to be painful. I probably waited 5 years too long and have some lingering arm and hand issues - oh, and I've gotten older as well!

Thanks so much for updating this, I have wondered how it was working for you.

kteague wrote:By the way, nearly 8 hours of sleep last night. Today looks good!

Kathy, I am so, so, soooooo very happy to hear the TENS treatment is working well for you.

I've never been able to imagine the utter exhaustion you have to have been going through with your extreme PLMD for so many years. You are such a good person and have helped so many on this board.

It's certainly time for things to get better for you.

Couldn't happen to a nicer person! I'm absolutely thrilled at hearing your good results.

Congratulations, Kathy. I am so happy you've finally found a solution after that long time of suffering.

O.

Just in case anyone else is considering trying a TENS machine for their limb movements, I figured I should give a complete account of the pros and cons.

PRO:
keeps limb movements to bare minimum
less strain on limbs so less pain
radically more peaceful nights
no meds needed for the limb movements

CON:
doesn't stop what's happening in my head

I had wondered what happens to all those signals in the brain that get thwarted by the TENS. So far have not seen an adverse affect, but have noticed a residual problem that I've discussed before about repetitive or "stuck" thoughts while dreaming. In the past, bad nights with the movements often meant a bad night with the thoughts. Lately it seems I wake up most nights after a couple hours due to the maddening repeated one-liners. If I get up for a while or sleep in the recliner for a while, I can eventually go back to bed and that wee-hours-of-the-night sleep is very very good. Sure wish someone could find a solution for the remaining issues. So close, and not really complaining, but sure would love to take it to the next level. Any suggestions?

kteague wrote:Lately it seems I wake up most nights after a couple hours due to the maddening repeated one-liners. If I get up for a while or sleep in the recliner for a while, I can eventually go back to bed and that wee-hours-of-the-night sleep is very very good. Sure wish someone could find a solution for the remaining issues. So close, and not really complaining, but sure would love to take it to the next level. Any suggestions?

Perhaps it is NREM dreaming. By waking up when this happens, you you may be being deprived of REM sleep.

My suggestion is that instead of thinking negative thoughts while awake about the repetitive thoughts you have while sleeping, embrace them, the repetitive thoughts. Your awake emotions carry over into sleep. You think it is a negative thing, and so it can't be anything other than irritating. In aikido, strength is found in ways other than just pushing against something. You use your enemy's own strength against him. Right now, you are agreeing to be the uke and you are not winning. You need to turn the sleep thoughts into the uke, and turn youself into the nage, and become one who bends like the willow but is still standing at the end. If you choose to see the thoughts as harmless, which they are, or even as good, then you will not be so irritated by them when they come. By declaring them to be an irritant to your sleep, you give them the power to wake you up. But the mind is not tricked. You cannot just declare them to be good but secretly still hate them. You must embrace them for this to work.


I might try seeding a substitute by thinking some thought deliberately over and over again, one that you hope to show up while asleep. Here are some examples:
* I love my CPAP machine, it makes me feel good.
* I am not afraid of tomorrow.
* God has been good to me.
* Math is easy for me.
You have to figure out a suitable one. The purpose here is to use the repetitive thoughts in such a way that it might change the way you think about some thing. I would be certain to repeat this thought as I was lying in bed, awaiting sleep.

I would pick a thought that is of similar length and complexity to what you think is going on when you are asleep. My guess is that the seeding would work better that way, but what do I know? I'm just a member of the peanut gallery.

LoQ, looks like I've got some reading to do to fully grasp the whole of what you are saying, but the concepts sound reasonable and the explanations are very visual.

LoQ wrote: If you choose to see the thoughts as harmless, which they are, or even as good, then you will not be so irritated by them when they come. By declaring them to be an irritant to your sleep, you give them the power to wake you up. But the mind is not tricked. You cannot just declare them to be good but secretly still hate them. You must embrace them for this to work.

Going to do a lot of thinking on this. Need to convince myself there is no detriment to these stuck thoughts. Reminds me of a few years ago after starting cpap that it was intolerably hot with no A/C, and to be able to sleep at all I needed a fan on me. Problem was, for nearly 20 years I could not tolerate any moving air without a horrible reactive airways attack of coughing and not being able to catch my breath. (Stopped a city bus once when other passengers got scared for me and called the driver to my aid. But I digress.) Anyhow, lying in my bed that night it dawned on me that my airways could not possible be reacting to the fan, as I was breathing filtered air through a hose and mask. I realized that in this situation my spasming airways was a learned associative reaction, as a gazillion times moving air did bring on a problem. I had to force myself to tolerate exposure to the fan knowing it couldn't harm me and that I did not need to react. Within a few nights I was able to differentiate moving air while under cpap and while not. I think this is kinda what you're talking about.

For so many years my stuck dreams were associated with utter misery with my legs. But if my legs are not miserable, is there any harm to the thoughts on their on? Probably not. I need to disassociate them from the leg movements and give them a chance to prove themselves harmless. I will work on seeing them in a positive light. THANK YOU FOR THAT!